Today I spoke with Carol at Dr. Futran’s office, and she is starting the process to get me an appointment for pulling the tube! The Interventional Radiology Department, the same gang of louts that installed it, has the responsibility of pulling it out. It should be sometime next week; I expect to hear tomorrow or the next day.
Meanwhile, my swallowing continues. Each day it seems to be getting a little better, so that the amount of coughing and other odd noises is reduced. I’m finding a bit easier to start up in the morning, and it seems like maybe more of my throat is getting involved in the swallowing. Yesterday I timed one of my IBPs, and it was around 18 minutes, start to finish. I’ve gotten to the point where I’m comfortable enough about my diet and my ability to swallow that I’ve actually stopped keeping a daily record of my calories. This is another part of my moving away from being a patient. Normal people don’t have intake records.
My work with Dr. Lu is progressing. I noticed a definite alteration in my state of consciousness during the appointment after my last post. I wasn’t jazzed or accelerated as I had been at Bastyr, but I definitely had a moment where it felt like something shifted, a feeling akin to when I’ve felt before as various drugs kicked in. Though I was a bit spacey, that was actually reassuring, since it made me feel like something was actually happening.
During the next appointment, I actually felt a momentary change in the way my throat felt. For reasons I don’t quite understand, my swallowing problem feels like there is a lump in my throat, on the right-hand side. While this isn’t really what you see on the fluoroscope, that’s how it has felt. On Saturday, as I was lying there, I felt the “lump” shift. It felt somewhat like it was dissolving, or melting, and shifting down, so that a part of my throat that had been blocked felt open. That feeling went away after a few moments, but it was very exciting while it lasted.
At the end of my appointment, I got homework. Dr. Lu painstakingly applied small adhesive dots carrying a tiny magnetic BB to four points on my ear. These points apparently correspond to the throat. My assignment is to periodically squeeze or tap these dots to stimulate these points, while swallowing. This is supposed to help remind my throat muscles of what they are meant to be doing. It may be actually influencing my gradual improvement, and at the very least it gives me something to make me feel like I’m working hard on getting better.
I’ve avoided further investigations into the combination of fish oil and chocolate. I’ve tried swallowing some of my pills, which has worked reasonably well, although I find crushing them still works better. Today I was adventurous and tried swallowing some of the small capsules of CoEnzyme Q-10 that I used to mix with the fish oil. I’m happy to say I got them down, but I wouldn’t say I have a practiced technique. Q-10 is a nutrient that seems to help people with heart failure, and, though optional, I find it does improve my energy levels. It’s nice to be able to take it without putting it through the tube, and without having fishy chocolate.
Another feature of my new eating regime is that I often go several hours between meals, which means I actually get hungry! Last night, I was sitting around in the evening, and I realized I was actually hungry, and I wanted something more solid than another IBP. I made myself a little rice, which I was able to swallow as well. I got the pleasure of actually chewing on it, and though it was a bit tricky, I swallowed it down. Imagine, feeling hungry, going into the kitchen and making some food, and then eating it! What an amazing thing.